what i see

December 5, 2012 at 12:45 am (ask the doctor, being remembered, dying, hope, how does it feel to die, living with dying, road trips, the dr. says) (, , , )

what we see, really see, is up to us.  as we were driving home, less than a mile from our home, i looked over and saw what i have seen for the 5 yrs. we have lived here.  there are 3 buildings not far from the side of the road. one is a small shotgun style home, the second looks like a one room shack, the third is a metal  storage shed that has been converted to a home.  they are all very close together and through the seasons i have watched the people who live there coming and going.  i have wondered how they live, how do they do it?  these are not homes with central air, the converted storage shed concerns me.  i have seen the person who lives there and i wonder how they manage. they can’t have running water, heat in winter and air in the summer.

as we drive by i observe that it is remarkable our home, our world is less than a mile from the world the blue house people live in.  do you think about them and wonder what their dreams were?  the reply comes, no, can’t say that i have.  we both look at those little homes everyday we drive down that road.  i see what he sees.  yet there is something amiss here.  he is kind and generous, he is loving and socially aware of what goes on in the world. he does not see what i see.

you may ask, and well you should, what has this got to do with death or being terminally ill?  i have been asking myself that very thing for over an hour. i have sat here poised to write one thing and yet this thing keeps coming into view.  let me see if i can make the connection, bear with me please, i am not a great writer.  i am not a great speaker either so that would leave mime but you wouldn’t be able to see that would you? no, you would not see me.

we are to the universe what a grain of sand is to us.  the very thought of the entire universe is too grand to see in my mind. it is limitless and so it makes sense we would not see the edges.  the world is more visible to me, in my mind.  the world is such a vast destination.  so many people, cultures and countries. some i am sure i have never heard of even though i am considered a world traveler.  i drove across the united states, nearly three thousand miles.  even then i knew i was only seeing a small part of our country.  georgia is a beautiful state.  i was stationed here when i was in the army.  my oldest step-daughter lives in atlanta, the youngest in charleston s.c. so off from sacramento california we go to be with our family.

local people speak of this county or that ( i think there are a million or so here) and i still, after 8 yrs don’t know where they are talking about.  if we get down to it there are places here in this small town that i have not been to. some of these places we have driven by or maybe even been to and i did not really see where we were.  for some reason i see people not geography.  it was a joke in my platoon to never give me the compass.  most times i could find my way but not by the most trusted tool we had.  i saw a tree with a scar on it or the rock that looked a bit like my dads nose.

so as we sit at the local eatery and the man across from me cries, i see it.  from the moment it began i saw the familiar signs of what was coming. at first i have to confess i was a bit confused and not sure i was seeing what was right there for all of us to see.  afterward i asked, did you see him crying?  he answers he saw something but wasn’t sure what it was.  we are so used to seeing a woman cry that we are found wanting when it is a man.  whenever we go to dinner the questions are the same, what do you see?  what do you hear?  i wonder how can a room full of people not see this man’s pain?

i see the stars and know they are part of the universe.

i see other countries and know we are a part of a whole world.

i see the city limit and know that i am part of a country, a state and a town.

i see you and i see a future. a life with many years to live. a life with hope and dreams.

i know what i see, in the world, the country, my home and in your eyes.

the question is what do you see and do you really see me?  i will one day be as intangible as the universe, the stars and even the people down the road.

i want, no i need to know that i was really and truly seen. i need to know that i will be remembered.  i don’t want to be the people down the road who are never really seen.

i wonder if the blue house people want to be seen or are they happy with just seeing their own world?

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i’m a believer

October 13, 2012 at 1:32 am (believe, choice, end stage congestive heart failure, hope, how does it feel to die, living with dying, pain, the dr. says, Uncategorized) (, , , )

today we had lunch with friends.  we haven’t seen each other in a couple of months although twice arrangements were made. each time we had to cancel due to  my health.  there are few people who hang in over the long haul, whether friends or family.  marge is about my husband’s age and her husband is a few years older than both of them.  age is not our only difference, they are republicans-we are not, they are church goers-we are not.  yet we find plenty to laugh and talk about.  part of the laughing may be the alcohol consumed when we go to their home.  our usual pattern is lunch, then on to their home.  we usually eat near their home since we have some concerns about their driving.  at first i was not sure if they drank but they had alcohol at their christmas gathering so i carefully brought up the subject. not wanting to look like a total alcy i told them about a drink my sister made for me years ago and how great it was.  marge almost jumped for joy! they were not sure if we drank so didn’t want to bring it up.

the drink my sister made is called “keoke” coffee. it is brandy, creme de cocoa, kahlua and strong coffee with whipped cream on top.  wow it is so delicious!! that very day we stopped at the store on the way from our lunch to their home. now marge keeps the works on hand.  she loves to bake and had made pumpkin pie from scratch.  the conversation rambled from one area to another and they had endured a scare regarding her heart health.  they know that i have a medical background so all the questions their dr. should have answered was answered over keoke coffee.  at some point her older sister came up in the conversation.  her sister, who is about her husbands age, has made plans to visit them next year.  marge said she thought this was optimistic at her age.

taking a moment and choosing my words with care i responded.  i have to believe, i have to make plans and hope to see them come to fruition.  maybe that is how your sister feels.  if she doesn’t make plans ahead of time what will she look forward to? if she can’t follow through for some reason she might be able to get a refund if she has paid a deposit or maybe she hasn’t paid a deposit it is just the fun of planning a trip to see her sister.  it gives you both something to share and talk about.  there are so many things i can no longer do, i choose to continue planning for trips in the future or holidays with family and friends.

a few days ago chris asked me if i wanted to go to the biltmore for new years eve. we went there a few years ago and had a really good time.  he went right on to plans for valentine day.  my throat tightens and the words are stuck right there.   let’s just get through the holiday season and then decide what we want to do, how’s that?  he agrees and yet it is in his eyes, why not make plans?  since i seem to no longer have really good days, as just a few months ago, it takes more consideration to make a commitment for any kind of travel.  new years eve at the biltmore is quite expensive and i don’t want to be stuck paying for a weekend that we can’t enjoy.  besides our little celebration at home is more to our taste.

i am going to admit and share something now.  sometimes my writing takes a path i was not expecting. that has happened tonight.  chris is going to augusta tomorrow, he will be gone until sunday mid-day.  i am so happy he is going and want him to know that i support and encourage his participation in taking pictures which he loves. of course being with our grandchildren will be great.  for weeks i have told him not to worry, it is only one night away so just go and have fun.  tonight sitting next to him i am still encouraging him and just when he is feeling comfortable, the pain and fever come.  if i go to bed will he notice i have fever? at times he is hyper-vigilant, other times he is go with the flow.  at one point the pain became excruciating and i let out a little cry, quickly covering by saying, “never mind, i thought i saw something but i was wrong.” ok that worked, it is good he leaves early so he won’t think of changing his mind.  this will pass….. or it won’t. either way he is going to have a good time and i will hope for the best.  i am a believer in making the most of every moment and making sure my love is as happy as he can be under the circumstances.  we are believers.

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Aimee Copeland leaves the hospital

July 2, 2012 at 11:57 pm (aimee copeland, choice, coping, creative writing, good news, gratitude, hope, living, love, motivation, optimism, support system, why blog) (, , , , , , , , , , , , )

yes Aimee went to rehab today and she will be there for 6-8 months.  I hope she continues to be optimistic and her support system stays in place.  maybe that is what really makes the difference.

looking back it occurs to me that my blog has many entries focused on others without much tie in to myself.  with some reflection, really not that much:), it is clear how that has happened.  my life has been about others.  as a nurse, there is the patient.  as a therapist there is the patient and even as a professor/teacher it is about the students.  most of us have others in our life that we give our love and support to.  mom’s and dad’s  have children, spouse’s have likewise, children have parents that may need their care.  parenting never ends if you are lucky and then there are the grandchildren.

there has been little time to think about my own situation.  situation is an odd word for this, not so odd if it is understood how i refer to my multi-system failure that landed me on life support in ICU as “the event.”  it seems tedious to refer to the event in medical terms or what would feel like a bit of melodrama at this point.  although when i read of others and their struggles it reinforces my belief that we all have a story.  as we go through our day we have a choice to have faith, or spin in uncertainty that can make us suffer beyond our physical self.

recently though I have had things on my mind to write about, however, two things stopped me.  one is the awareness of how this blog has changed from its original concept. second, is the awareness that i am not a writer.  it’s ok. to know what our gift is, is a blessing.  when reading other blogs i am in awe of the creativity and flow of the story.  the new goal for me is to remember and follow my true purpose in writing at all.  as for the other it is my intent to be ok, really ok, with my limits as a writer. this was never meant to be anything more than a personal blog.  future posts may be boring to some who now read my postings.  there are so many more interesting people out there.  those that become bored please do not feel the need to comment on said boredom.

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Decisions to make when dying

January 16, 2012 at 8:05 pm (choice, death, dying, end stage, hope, how does it feel to die, moving forward) (, , , , , , , )

decisions to make when you are dying are somewhat different from the ones being made every day by healthier people.  some are exactly the same of course, what to eat, where to go, what to read ….  our lives are made of all our decisions great and small whether they were the best or not.  in general it is my pleasure to say decisions made by me have been the best to my ability at the time.  putting decisions in perspective is a gift we can give to our selves and others.  it is not your mother’s fault if you made a poor decision at 30.  too often people fall back on how it was in the day.  who screwed them up and how it is not their fault as the teacher in 3rd grade broke their spirit.  not that our past does not have a huge impact on who we become, that is a valid point to be made.  however, it is in our own best interest to say that was then and this is now.  no one is making my day-to-day decisions for me unless given the power to do so. 

we have the ability to choose peace of mind and heart.  my heart is at peace by choice.  recently I have read a lot about how someone dying is supposed to be feeling. of course these are not written by someone actually dying.  there are some common physical symptoms as we reach closer to the bear (death).  food is not as important since the body is shutting down and we are not as active.  other physiological changes are beyond our choice.  the level of energy experienced is diminished naturally, a lot of focus goes into just breathing.  for the last few months I feel myself going through some changes physically, they are markers of the disease and quite expected.  when you enter end stage it is crossing a threshold(doorway) that you will not be leaving.  it is not a bad place to be and if you are psychologically ready it can be recognized for what it is and even appreciated.  knowing where you are going is somehow comforting.  at this point I know where I am in my progress.  what comes now is the mystery.  so I am going to keep writing as long as I can.  this is part of my legacy to others.  this is how it felt for me to die. 

so far, even with the fatigue, my life is better than I could have ever imagined 20 yrs ago.  in May it will be 20 yrs since I first laid eyes on the man who would become my best friend, my love and my husband.  as a more practical person the whole idea of love at first sight seemed romantic fantasy.  today I would tell you it happens.  the thought that was mine at that moment was, if I can spend even one day with that man my life will be better.  there is no reason why I would think that except for love at first sight. 

for the past few days I have been working on a project to make a difference for him later.  it is another decision that to some is insignificant and maybe it really is.  there are still things of mine that can be let go to make sure his things are all around him.  he is comforted by his things.  one of the reasons I love him is his love of books and we have more than most would think reasonable but this is our home and our choice.  the room we use as an office has both of our desks and our guest room has been crowded with books on the floor.  my decision has been to move my desk out of here, give him a large bookcase that has been for my use and in general try to arrange things so when I am not here he can come in here and feel comfortable.  knowing how he is my stuff would be still sitting here yrs after I am gone. yesterday he did make the remark he did not understand why I would want to give my desk away when I use it.  as I gave one reason or excuse after another, seeing he wasn’t convinced, I stated it directly.  my desk is just a desk, yours is a special piece passed down by your mother, it makes no sense to get rid of yours.  he of course made the offer to do something with his so I had to be frank and get him to admit when I am gone he is going to want his desk in there and not mine.  it makes sense to take care of this now.  one thing I know about him is when the time comes he may be paralyzed to the point of not being able to get rid of my things and I love that he would want to keep reminders. my concern is he won’t be able to let anything go and it will be too much for him.  he has shared with me his fear of not being able to go on without me.  many long talks later we both know that he is going to need time but he will go on without me.  he knows we both want him to continue to have a social life and to be the best father and grandfather he can be.

other decisions are going to be made over the next few weeks.  it has been 4 yrs of my 5 yrs to live.  all I can say is it has gone by quickly and been so great!  I am not giving up at all, that spark of hope lives on.  the hope is just changing. now my hope is to go peacefully in my sleep, my hope is  to make the event as easy on my loved ones as possible. my hope to live on in the memories of those I love.  so much hope and so much to be grateful for!!  tomorrow a friend will come to help move the desk, it is going to another friend and that makes me happy.  I hope she will like it as much as I have.  I hope she thinks of me and is inspired. 

it has been 4 good yrs and may be more to come, who knows for sure?  I will try to make the coming decisions to the best of my ability.

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New Year’s resolutions and hope

January 3, 2012 at 8:46 pm (hope, love, New Year's resolutions, Uncategorized) (, , )

after reading the post by the comeback I began thinking about what the whole New Year’s resolution tradition.  if I did not make any resolutions am I saying “oh well” and just accepting a mediocre life or worse?  this led to long talk with hubby and later with a younger friend.  my own advice as a therapist has been to make small goals along the way.  this gives a person the chance to experience success and learn to set realistic goals for themselves and only for them. too often people would say if only he/she would do x then my life would be better. the old “fix them” routine.  over the years my own resolutions have been decidedly on ways to improve myself as a human being, mother, daughter, sister, wife, therapist, teacher, soldier….. it has been my belief that using my energy on other’s inventory was a waste of said energy. 

long-term resolutions seem a bit more arrogant at this point in my life and yet they are still made.  tonight it came to me, looking across the table at the love of my life, I asked the question.  if you were making my resolution for me what would it be?   at one time my goal to make the world a better place took the form of law studies.  the first rule of cross-examination? never ask a question you don’t know the answer to.   would i dare ask this question, and leave myself open to an answer, when there had been no preparation for the answer?  yep indeed we went there.  after some thought, and most likely some trepidation on his part, his response to my surprise was – if I were making your resolution this year it would be for you to not be so hard on yourself.  this has given me great pause. 

those words “don’t be so hard on yourself” are words I have heard over the years.  it has never been my intention to be hard on myself, only to expect the best of me every day.  lately I will admit to feeling more dissatisfied with my performance as a wife and as a person in whole.  my physical heart is tired and needs rest if it is to last a bit longer. my heart of spirit needs to be reassured that I have given my all to any task for the day.  some days when texts of regret are sent, can’t make it again, it is a loss of a standard set for myself by myself.  it is also one of the events that we the ill are warned of. brochures on what is ahead include the perception from others that we want to be left alone.  that the healthy will not slow down for the ill.  it makes me think of basic training, the tallest are in the front and run at their pace.  the shortest, are at the rear and told to keep up or there will be consequences.  at 5’2″ my spot was ever in the last row.  knowing my determination the drill sgts added that i would be the road guard. this meant running ahead of everyone else, stopping traffic until the last runner was out of the road then catching up to them and getting back in place.

it has been with that same determination, that drive to keep up, that has made me who I am today.  although there are many things I could improve on, being a good human being is not I would say one of them.  this above all else has been my life long resolution.  if the lesson I need to learn now is not to be too hard on myself then I will embrace that although putting that into action, understanding how to picture that will take some work.  I hope not to disappoint Chris:) okay that was funny, a little anyway.

if I could encourage one resolution for us all it would be to live in love and all that brings with it.  this is not just love of others but for ourselves. forgiveness is a miracle that comes from loving ourselves enough to let go of anger.  if what you do today or everyday is from a place of love it is my belief peace in your heart and soul will follow.  there have been tragedies in my life as in many others, it has been a journey to arrive at this place and I like it here.  it will end when it ends, that is not my choice, for today and every day gifted to me, I will honor it be resolving , as I do daily, to appreciate this time, the people around me and hope ….

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To Resolve or Not to Resolve? and a few last words for 2011 from 2012

January 2, 2012 at 2:56 pm (choice, christina symanski, gratitude, hope, NLP, the bad cripple, the comeback, Uncategorized) (, , , , , , )

word association has been of interest to me for years longer than my psychology career.  how we go from one thought to another or retrieve unused but stored information in our brain fascinates me.  even before my teaching years NLP ( neuro-linguistic programming) made perfect sense to me.  over the past few years there have been many studies of how we store and learn information.  while teaching, this gave me a way of helping students who were struggling, if it is understood how this individual learns and is taught in that form, there is a better chance of success.  this is all relevant now as I am trying to decide what thoughts to lead with and how to keep them all in some relatable form.

 the death of Christina Symanski has been a bit of gossamer that can’t be cleared away.  the only way for me to move forward,  is to put it in perspective.    perspective is a word often used by those who don’t actually have the ability to use it.  when speaking to someone who has gone through a life changing event the best thing is often to put this event in to perspective.  recently a man was sharing with me that his mother had announced to him she had been molested as a child.  he was quite  off put by this and in his words “shut her down.”  my advice was solicited and given.  it would have been more productive if this woman could have sat with an old friend or therapist to discuss this event.  if she still felt the need to share this with her son then she could do so from a position of perspective.  he felt she had just dumped this on him.  this goes back to how much do we share and with who?  just want to add that in my opinion the recent news of boys being molested in her home town (Pennsylvania) was a contributing factor in her anxiety.  having the chance to put this event in to perspective at the time would have aided her over the years.  it still goes back to my question of what is the motive for telling someone about such an event?  if it is just to make you feel better, stop and think this through.  what do we want the outcome to be?  more than one cheating spouse has said they had to tell the other as they deserved the truth.  this has seemed a bit cowardly to me.  some burdens must be carried by us alone, in my opinion.

there has been very little information regarding the passing of Christina.  do we really need to know more?  it is a tragedy her family and loved ones will have to find their way through.  it is doubtful she could have lived for a month without food and water.  food yes, water no way.  does it matter if in her blog, looking back, that there were hints she might end her life?  these were her decisions and no one else can tell us if our life is worth living.  no one can give you a reason to be hopeful if you can not find one in yourself.  this is a tragedy that is played out daily around the world yet we have given much time and thought to this one individual.  is it due to her perceived good life? she was an artist and very active in the spinal cord injury community.  does examining her life reassure us we would not do the same thing?  we see a person who has been taken advantage of and say it wouldn’t happen to us since we are smarter and wouldn’t put ourselves in that position.  the old “those people vs. us” theory?

in my search for others going through similar circumstances it has been my good fortune to find much more than that.  it has been an inspiration to read of how others are caring for their loved ones with either terminal or life-long illness/disabilities.  still others have the disability and are living their life to the fullest in their own way.  so 2011 has come and gone.  it was a good year and it leaves me hopeful for the next year to come.  being hopeful is as important to me now as it has been throughout my life.  that optimism has sustained me over the years and I trust that it will continue to do so.  our hopes  adjust to the situation.  knowing my time is running out means I won’t be hoping for that promotion ( no longer working) or the big trip (no longer taking trips over a few hours and no flying at all).  hope still lives here though, it is in the hope of being remembered, of leaving a legacy that will be passed on.  the hope of still having some good days, being a good friend and companion to others, these are my hopes now.  do I still make New Year’s resolutions?  yes I do.

so now we come to the point of this post, making resolutions or not.  this is a personal choice and yet I read with interest the blog hosted by Shane Hodge, the comeback.  his post was regarding making these resolutions and what it says about us if we don’t.  this man is on fire and has much to share with the rest of us.  shane wrote a book by the same title and I am in the process of reading it.  briefly what he shares is how he came to his own  comeback.  through conversations with his dying mother certain truths became more evident to him.  his mother was able to leave this legacy due to his ability to hear what she was saying.  this is my own hope to leave a legacy with loved ones that will be remembered.  to know that your philosophy on life is being honored can be our greatest accomplishment.  

 after reading an article about resolutions shane wrote about his feelings and what this said to him.  the poll said that more people are not making New Year’s resolutions, the reason given is they felt nothing could change for the better.  they were expecting more pain and bad news for the coming year.  the following is from the comeback site.  “I’m going to sit down and write a nice long list of all the stuff that I no longer want in my life next year. I’m going to write a list of all the things I want to achieve next year, I’m going to create and commit to a bunch of New Years resolutions. Why am I going to do that? I will do it as I refuse to let “Oh Well” control my life and I can make sure that happens because?      I believe in Miracles.” (from Shane Hodge w/permission)

this led to my own poll of who is making resolutions and why/why not?  for now I am going to go rest and come back later.  this is unusual for me to post more than once in a  day but I have much on my mind now and this helps.  the other reason is one of my cats, chloe, is making it very difficult to ignore her.  posting a pic which is also new for me. 

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this too shall pass….

December 20, 2011 at 10:31 pm (family, friends, holidays, hope, Uncategorized) (, , , )

one moment I am asking how much fun can a girl have and get away with it, the next I am getting the answer.  the last few days have been so much fun, seeing friends, getting out and just feeling normal for a while.  last night just before some friends arrived at our house I started feeling the physical toll that can sometimes come on so quickly I get whip-lash.  then they are at the door and life fills the room.  there is no room here for thoughts of anything but sheer joy.  baby g is dancing, tinliz who arrived in a funk seems to be breaking through, hd, or the baby mama, is looking tired but appears to be happy to be here with us in this moment.  k is her usual sweet self and it is easy to put worries aside for this time.  this moment, this memory being made.  every fiber of my being is warning me, how can I listen now?  now I am rushing toward happiness and the kind of love and contentment that feeds the soul.  this has been my hope and my goal all year-long, another holiday with my family.  whether it be one more or … the important thing is it is another year. another opportunity to love and be loved. 

so I have to believe that this will pass, the truth is even if it doesn’t I am happy.  hope lives here, here in my heart.  it is not the same kind of hope experienced a few years ago. it is so different as to be almost unrecognized. much like an old married couple who has loved for so many years they have not stopped to think of how their love for each other has become so much more than it was in the beginning.  my hope has become not that I will live forever but that I will live in the memories and hearts of others for their forever.

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Mourning for Christina Symanski: Better Off Dead?

December 14, 2011 at 2:15 am (assisted suicide, choice, coping, death, death with dignity, family, hope, how to die in oregon, life is random, moving forward, Uncategorized) (, , , , , , )

anyone watching “how to die in oregon” could come away with several thought-provoking ideas.  one that, in my opinion, was fundamental to the documentary is the choice/ability to change ones mind.  if you opt for assisted suicide or ending your life with “dignity” there will not be a chance for that very basic tenet.  until recently I have held firm that it is the right of the individual to make that decision for themselves.  in my mind there are qualifiers, you must be terminal, in your opinion( and not the opinion of others) your life has ceased to have meaning or dignity.  it is still my belief that one person can not understand the full gravity of another humans suffering….

that is until I became aware of Christina Symanski.  if you are upset easily with what may seem to some as a harsh interpretation then I ask that you not read further. if you do please keep in mind that it is one persons opinion, mine, and that is the only one I can voice here with real understanding and honesty.  initially the reaction to her decision was the standard not for me to judge. it is not my intention here to judge her as a human only the decision and what it was based upon.  she truly suffered, in the blink of an eye she made a rash decision and paid for it dearly.  in 2005 this young woman was at a party, she became frustrated that others were not going for a swim and so she dove into a pool that was not to capacity.  as a result her life as she knew it was ending, it could have been a beginning and for some that is what it would have been.  only another quad would be able to have more than a cursory knowledge of this way of life.  yes I said way of life, it was different from what  she had experienced so far. to some it would have been a change in lifestyle, to her it was the end of life as she knew it.  on a smaller scale my own experience took me from extremely athletic to sedentary.  this was not by choice and certainly took adjustment.  while not on the same scale it gives me a glimpse some may not have.

on the outside Christina appears to have so many reasons to value her life, yet she made the decision to end her most precious gift.  having a mother with a serious disability gave me a different understanding of how to cope with obstacles.  even now with numerous health problems and post-polio syndrome marie does not consider( to my knowledge) ending her life.   the question that seemed to repeat itself throughout her blog was why me?  it has been my choice to ask why not me?  the what if game can lead to crazy making thinking.  it is my belief we are where we are supposed to be at any given time so it would stand the what if does not have a place in my life.  certainly that does not preclude learning from mistakes.  there have been many along the road and I anticipate making many more.  it gave me a chuckle, and I hope I can be forgiven here, to read about a man with Parkinson’s who fell trying to something he wanted to do and yet most certainly knew it would not come out well in the end.  I laughed and laughed, not at him but at myself and how we give up such ideas only when faced with very real danger.  at times my physical being is so weak that I trip and fall quite easily.  last year while my husband was away it was my belief that I could go down the few stairs in front without holding on. what was I some invalid?  out I go and down I go, very hard it should be added.  over the front and into some hedges, as I lay thinking of my humiliation it occurred to me that the neighbors could not see me due to the hedge.  so taking my time I eventually made my way to a sitting position, drug myself to the stairs and in time back to the house.  a few days later, hubby still gone, it seemed reasonable to try again. of course I had learned my lesson and was prepared mentally if not physically.  was I none the wiser? well yes and no.  as I began to fall it occurred to me that the army training would be valuable about now.  so I looked to the side of the porch and pitched my body that way as it would be a softer landing.  it was farther down but it was softer.  the farther down part made it a bit more difficult to maneuver back to the porch, however being in one piece gave me spirit of heart.  until his return the garage became my exit and entry as it was easier and safer.  

 laughter seemed to be missing from her writing.  it is not that she didn’t experience laughter it just occurred to me it was absent in a way I can not explain.  although she was involved with good works, was able to continue as an artist and had time on her side, she must have been so sad.  not sad  in the common way we may feel sad but down in your heart and soul sad.    the kind too many are not able to recover from.  

this one time I will allow myself the what if question, what if this young woman had been able to wait, and our system of healthcare could have given her another option?  was she just destined to this end? that is one possibility, there is no hope in that answer. no hope is really what killed this young woman.  she will be remembered by many, for as many different reasons as there are people.  she will be remembered here in this house and her death has given me more  questions  than answers.  a life gone too soon. her choice.  I will respect it was her decision.  like every decision we make it will continue to affect others.  those that live are those that live with our decisions.

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Still here

December 7, 2011 at 12:16 am (choice, coping, death, doctors, end stage, holidays, hope, waiting) (, , , )

no one is more surprised than me, with the exception of my dr.   We met briefly yesterday and there is not much new to say.  we sort of look at each other and wait, the pause bothers him more than me, that is the training. I can sit and wait for however long it takes.  one of the hardest exercises for an intern is that waiting and not filling the silence.  it is a skill that was a gift long before becoming a therapist.  waiting does not cause me distress, waiting in line or in traffic? no problem.  this waiting is different in many ways. most importantly I am not anxious for the waiting to end.  this is a comfortable silence.  at times it seems daring to speak the words of the future plans, the waiting may come to an end, the alternative to planning seems giving in to hopelessness.  I am many things, hopeless is not one of them.  my calendar is at the ready and future lunch dates, dinner plans, birthdays to celebrate, these are already marked and waiting to burst forward at the right time. 

my dr. is a kind man and he is optimistic with me.  we both know we are waiting and seem content to chatter a moment, nothing new, we both breath.  he is going to be around for the holidays and this is reassuring.  it is comforting to know that if the silence is to be broken he will be with me.  there will not be a hospital visit as that might become a pattern I do not choose to establish.  the mother was diagnosed with a similar problem, it should not be so serious and yet it is. she has been in the hospital maybe 3 times now.  if you go they will keep you, if you build it they will come, they think if you come they must do something.  the secret is knowing there is nothing to be done and accepting it.  Chris asked me what the dr. said about my low energy, I tried B-12 and just got horrible nose bleeds.  there is nothing to say, it is not what he wants to hear.  these are the facts ma’am, just the facts.  my energy is pretty good given the situation, it is going to get worse.  we are spoiled by the quiet, we are waiting for the words to start.  yet we do not dare listen to them. they say it has been a long silence and soon we will have to talk.  I can wait, I can wait.

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road trip and the beginning of a new adventure

November 22, 2011 at 8:27 am (gratitude, holidays, hope) (, , )

tomorrow we leave for our annual trip to Charleston! it is hard for me to reconcile what the drs. say and how I am feeling at this moment.  we were at Costco and gathering some treats to take to Charleston for the grandkids and of course some grown up treats as well.  Chris remarked about it being another year and asked me how it felt. how does it feel to be living through another holiday season? it feels fantastic and I am so grateful to the universe for this gift. 

saturday the conversation was much more serious and trying not to show my hand, while still warning Chris of what was coming, very quietly I said “we need to do our shopping today.” I did go on to tell him I felt a crash coming on and told him not to worry it was not going to interfere with our trip.  truth be told I had no idea how bad it was going to be but I could definitely feel it coming on hard.  once we were home I was out and barely remember sunday at all.  none of that matters tonight as we pack for our trip.  last year at this time I was entering end stage and knew it instinctively.  funny term end stage, last act of the play, lights turned up and everyone can go home now.  enjoyed the show, yes I have enjoyed the show.  I wouldn’t have missed a minute of it, if you miss one moment it forever changes the next moment.  it is good to be in this place right here and right now.

my hope is that times like saturday and sunday are easier for my love due to the soft way I whisper it in his ear.  “don’t worry it will only be for a day or two at most,” ” we are going to be fine and we are going to Charleston.  Charleston is the time at the end of the Georgia/southern heat when we can travel the 6 hours to spend a few days with our family.  the Atlanta daughter will be there and the Charleston daughter, son-in-law and 2 grandchildren.  we will be fortunate to visit with the much-loved daughter’s mother and the son-in-laws mother.  Susanne (wife #1) has been generous of spirit and shared her lovely daughters with me.  she is a wonderful mother so I am not quite sure at times how I fit here but we make it fit.  we have gone beyond the fathers wife but never really the step-mother.  no matter what the label I am in love with them all and can’t wait to see them again.  the sounds, the smells, the activities, son-in-law frying the turkey, all those things I have looked forward to and here they are.  if I don’t live another day when it is over doesn’t really matter, I am here now and that is all that matters.  now.

for families who have lost a loved one my heart goes out to them. for those who have lost the heart of a loved one and been left with the shell my heart goes out to you.  please give yourself something this year, take a bit of time for yourself, just you and whatever makes your heart sing.  no one can judge you harsher than you judge your self, so please take time to live as if you appreciate your life.  dance, sing, or cry, whatever you need for your soul, just do it.

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